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M.E - Myalgic Encephalopathy.

Discussion in 'I Have a Question...' started by BeautifulDisaster., Mar 10, 2010.

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  1. BeautifulDisaster.

    BeautifulDisaster. Banned Member

    Does anybody suffer from this debilitating, awful illness?

    I've suffered since 2008.

    I am moderately-severely affected, on some days, severely affected only.

    I rarely go out, I'm now in need of a wheelchair because it's that hard to go out, I haven't got one yet, so when I do go out, (very rare), it's hard for me.
    It's hard just to get around the house.

    I have a bath once a month, if that, because of how it affects me.

    I am in bed for most of the day.

    Rarely I will go downstairs for the day and lie on the sofa, but that doesn't happen at all much anymore.

    I'm on narcotics for pain relief, they don't help anymore, because of tolerance, so I've been trying to come off of them but because of my drug abuse, it's really hard as I keep taking large doses, screwing up me coming off of them and having to start again.

    It can be life threatening if it's very severe, it has taken lives before, but luckily I'm not that severe... part of me wishes I will be, yes, I am screwed in the head... :dry: (or just mentally ill.)

    There is no test for it, only elimination, so I've had a lot of grief in hospital multiple times because nothing showed up, as well from family members, and "friends", even strangers.

    I'm in the process of confirming the diagnosis, I see the doctor on the 15th, I will be giving him a letter because he has said some things that are very stupid, and they have upset me. I do hope this letter speeds up the confirmation process, as I need to get a wheelchair, and I need the diagnosis confirmed for my application for Disability Living Allowance.

    The symptoms I suffer from are...
    fatigue, exhaustion, joint pain, muscle pain, widespread body pains, chest pains, aches over my body, sharp pains in my body, eye pains, headaches, noise and light intolerance, food intolerance's, alcohol intolerance, sore throats, lethargy, nausea, breathing problems, heart problems, balance problems, sleeping problems, shakiness, temperature irregularities, digestive problems, memory problems, concentration problems, trouble absorbing what's being said to me(even more so), trouble with speech(even more so), confusion, mental fatigue, basically brain fog, postural hypo tension, dizziness, vertigo, feverishness, I think that's all of them.

    As you can see, I suffer from quite a lot of symptoms, obviously I do not suffer from them all in one go, but these are the ones I've suffered with since developing M.E, and much of them I still suffer with daily.

    I'm not sure where to post this, but I'm wondering if anyone else here suffers with this, and I'll also use this thread to talk about my struggles with this illness, and the status of the process of confirmation, if it's alright.

    Please don't attack me here either, I've gotten a lot of attacks about my M.E, by family, "friends", doctors, and even strangers. They say I'm just attention seeking, faking it, it's in my head, it's psychosomatic, it's me being psychotic, etc.
    If you are going to attack me, please don't... I just can't deal with it.
    I realize this forum is open to all, including guests, so I'm feeling vulnerable.

    Thanks for reading.
  2. aoeu

    aoeu Well-Known Member

    We won't attack you here. Ordinary fatigue is bad enough, I empathise with you completely. I hope you find some relief.
  3. BeautifulDisaster.

    BeautifulDisaster. Banned Member

    Thank you for the reassurance and empathizing. I do too.
  4. lost_soul

    lost_soul Staff Alumni

    i suffer from fatigue, and cant gtout of my house, but mine is being scared of what ppl think about me and just fear of being outside. i empathize with you and understand its so hard to deal with. i have a friend with someof the same symptoms. if you wish, ill talk to him and see if hes willing to talk to you if you want.
  5. BeautifulDisaster.

    BeautifulDisaster. Banned Member

    It's much more than fatigue though, that is only one of the very many symptoms, and it is not always the worse symptom either.(just want to clear this up)
    Sometimes I can't get out of bed due to the pain more so than the fatigue, or the other symptoms.

    And, if he wants to chat, sure.
  6. peacegirl

    peacegirl Well-Known Member

    Hi BeautifulDisaster, oh my goodness, you sound like me exactly. I've been through years of struggle with this condition and trying to find answers. I totally understand where you are coming from. You are not psychotic; you are not neurotic; don't let anyone tell you that you are these things. There IS something going on so pleaseeeee don't give up and think that you are crazy, like some of these doctors insinuate. If they had one day, or even one hour of your symptoms, they would change their tune. I hope we can talk again because there IS hope. Please know that you are a 'Beautiful', you are not a 'Disaster'. I hope one day you will be able to change your username.
  7. Scum

    Scum Well-Known Member

    I think the reason that it gets a bad name is because some people malinger with it, and also, there are not, as far as I know, any diagnostic tests, it is just something that is often diagnosed when everything else has been ruled out. I have seen your posts about this in other places and hear that you struggle so much. I'm not putting you in the category of people who do malinger, so don't worry about that, I just think those people give genuinely ill people a bad name.

    When I was at uni I had a friend and her best friend from home had ME. Apparently she went to a lady who was able to help her with her diet and nutritional intake (this was not through the NHS or anything, they found her themselves, but I can't think where or how, but she was somewhere an our or so away from Sheffield) and when her diet had been adjusted it made a huge difference to her. Have you ever looked into anything like that? It's so hard because you can't physically fight ME, all you can do is learn your limitations and live within them, which can vary day to day, hour to hour, minute to minute.

    If you haven't understood any of that, then please say. I'm not attacking, I'm trying to be sympathetic and would not want any of that lost in translation.

    I hope you can find some comfort and support here.
  8. BeautifulDisaster.

    BeautifulDisaster. Banned Member

    I have made a lot of adjustments to my diet, and I've only gotten worse and worse, it seems nothing makes this better...
    I'm glad it worked for your friend though.

    I did get a bit upset with some things said but you cleared that up for me, so no worries. Thank you.

    And, thank you peacegirl. I'm sorry you suffer with this too.
    Beautiful Disaster is something I think I'll always have as a name, but for more than one reason.
    Thank you for posting.
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